The Aftermath of Multiple Sclerosis

Multiple sclerosis means nothing to me. Unworthy of consideration, I don’t brood over what MS will do tomorrow. Not anymore. Instead, cheery moments pepper the days while teasing my senses with new encounters.

— “Definitely the best series I have ever streamed.”

— “I just made a new batch of my protein bread. Better than ever!”

— “He will be the perfect character in my next story about…”

My thoughts roll back to a common theme.

— “Rogue is going to love it.”

— “I wish Rogue was here to try this.”

— “I can’t wait to share my stories with Rogue.”

Living His Best Despite the Terrible Setbacks of Multiple Sclerosis

My hatred of a single word has never been greater than Despite. It is a harsh caveat to place on every storybook moment I experience. Such statements reveal that my life is a mere consequence. Sorry, that’s not for me. I choose to live in my romanticized world of denial, where happiness is normal and normal comes easy, not where I “get to experience happiness despite living with a chronic disease of the central nervous system.” No.

Subtle flashes of health and grand experiences make life worth living, even while I remain mired in an incessant and punishing sentence of life with multiple sclerosis. As much as it rules my life, I’m not bitter.

How I live is not the aftermath. I despise the nightmare for other reasons.

True fear follows consequences, be it dealing with the fallout of a single life-altering event Because of MS, or managing the repercussions of horrid aftereffects that reverberate on a constant (occasional/random/unexpected) cycle, again Because of MS.

The disease damages the myelin sheaths that cradle nerves in my brain and spine, wreaking havoc on my ability to run, walk, climb stairs, etc. That’s MS; every patient deals with that fact. And I negotiate the obstacles, discovering assisted or alternate ways to move. Concessions are part of life, I get it. A passionate desire to fight the inevitability of my decline forces me to accept assistance. I wear a brace on my leg to reduce the impact of foot drop. I have spent thousands of dollars out of pocket to take part in cutting-edge treatment programs. Elliptical and cross-training machines in the gym are part of my standard workout regimen (1 to 2 hours of intense exercise, 5 or 6 times a week) as attempts to delay the gremlins tearing me apart from within. There’s more, but you get the point. I will not go quietly…

The aftermath finally reveals itself when I am with Rogue. We are not active together, not how a daddy should be with his 14-year-old daughter. Much of our time is sedentary. Walking takes so much energy and exhausts me the moment we move. My daughter yearns to fly beyond her constraints yet acts content in the world she knows. She is a caged butterfly, but only with me. That image is terrifying.

Mirroring the loss in my left leg are the defects in my upper body. Years, possibly months away from being nothing more than a stump, a shadow of past glory, my left arm fades at a predictable pace. Resistance bands and physical therapy offer a hint of comfort. I need to feel like I tried, but my southpaw days are over. Since we have not yet developed that breakthrough treatment (but, damn, we are getting closer), I track the degradation in real-time. I’m not going to cry out, “Woe is me,” but I will continue sharing stories of my loss and flood my channels with images of my twisted form to raise the money those scientists need as they close in on that development.

Once more, Rogue suffers the aftermath of my inadequacies. I’ll say what she won’t, as she never stoops so low. My daughter is stuck with a father who cannot do the things she needs. Watching her dance around a volleyball court is an amazing display of talent and hard work. Fathers take pride in watching their daughters progress, boosted by the countless hours they spent knocking the ball around together. Laughter echoes across the court when they play a scratch one-on-one game. Every child remembers the day they first beat daddy.

Rogue does not have that. Instead, I watch from afar and hope someone else fills the role I can’t.

Attempts at everyday life, my bid to act, move, and live how I’m supposed to, often end up with me splayed across the floor. Over the past year, I’ve experienced at least ten falls that the judges would deem significant. At least four have bruised my left rib cage. I think I continue to aggravate an injury that has never healed–my ongoing cycle of pain and damage. I blacked out twice. Every time this happens, I dust myself off, wipe up the blood, and return to what I did before that minor inconvenience. My body hurts for a bit of (or significant) time afterward. Thousands of reminders echo the same message: “blah, blah, blah, life sucks, get over it, keep moving.” I keep moving. Continuous injury is more accurate than reinjury–my ongoing cycle of pain and damage. Despite, that evil word, never enters my vocabulary.

Then comes the aftermath.

Rogue cleaned blood in the garage this weekend after my last fall. The first thing I remembered was sitting on my bed, holding a towel to my face. She took care of everything until her mom came to pick her up. I shrug off the entire episode as “just another day” while she remains stuck with the memory of whatever happened. My daughter shouldn’t have to shoulder this much responsibility. I want a teenager to test the boundaries of my patience rather than caring for the frailty of my body. What I want doesn’t matter; she alone must face the consequences of a father battling multiple sclerosis. I don’t live Despite, but Rogue must live like this Because.

Bike MS is less than a month away! Morbid curiosity pushed me to try a short ride last Saturday to see how my body would hold up. My left side’s exponential breakdown makes it nearly impossible to ride, even on a recumbent tricycle. Searing pain from bruised ribs and a welt on my forehead that will not accept a bicycle helmet confronted me with a painful reality. My broken-down frame cannot ride this year.

MS has pushed and pushed, a constant battle to see how long it can push me out past the brink of sanity before the inevitability of a breakdown creates the aftermath I avoided for so long. I spent the last 24 hours debating my next move, hoping to unlock salvation before multiple sclerosis pushes me past my breaking point. Long gone is any hope for a deus ex machina that will deliver a solution before my reality collapses and sends me tumbling into madness.

Before the cliff gave way, before “something” had a chance to send me over that razor-thin lip, I jumped. The parachute risers are unattached, and my reserve is filled with peanut M&M’s to snack on during the long freefall.

The fact that I cannot ride in bike MS this year will become the reason we need to overcome the devastating effects of multiple sclerosis: it has destroyed the remaining piece of a past I used to refer to as me. “Fuck you, MS! This is why I ride” is gone. All that remains is “Fuck you, MS!” I’m okay with that. Without the safety of the only constant in my life since 2003, my jump sends me into a void where nothing is guaranteed.

I don’t want the cautious life, the easy path where I am guaranteed to morph into another tragic statistic who got dealt a bad hand, put up a good fight, set a noble example Despite, yet eventually mired into an inevitable collection of sad stories.

I refuse to be a voice without a voice, instead hiding behind my words. Crafting lives and forging replicas of Kevin has its place. My stories will continue to construct those roles and stock them with the reality my mind creates. The other reality, the one people can see, has suffered because of this deception. Accusations of bravery and strength in the face of multiple sclerosis leave me feeling like a fraud. The truth was chopped up and fertilized into the characters with the lives I had, wanted, feared, or dreamed about. There is no longer an correlation to any version of me.

From Scylla to Charybdis

Greek mythology shares the tale of Scylla and Charybdis, two monsters straddling the narrow waterway between Sicily and mainland Italy. Ships navigating this Strait of Messina face the horror of two deadly choices. Sail close to Scylla and the beast would pluck six sailors from your vessel; everyone else would live Despite the loss of those six. Navigate on the side of Charybdis and risk losing your entire ship to its deadly whirlpool, but you might just save everyone. All for nothing is the ultimate Because. No longer willing to continue with multiple sclerosis chipping away pieces of my existence, I faced Charybdis.

Perhaps historians will document my leap as a tragedy where I abandoned any reliance on futile gestures and tokens once meant to guide me toward a cursed future. “At least he said, ‘I tried.’ What a glorious life!”

Then again, the climax of their story (my story) could be the ultimate example of strength in the face of adversity, overcoming a once-dismal to usher in a new standard in personal care. “Everything changed when he said, ‘I’ll try.’ What a glorious life!”

A third option might lead to another Greek tragedy with a predictable yet fateful ending. If plummeting to a devastating conclusion is the outcome of my life choice, my obituary next year will note the end for a man who threw away 25 years of a “safe decline” in favor of a better way to go out. “In the end, he tried.”

Where Everything Goes from Here

A final answer to my resolution doesn’t matter. Nor does that ideal situation or the direction in which I’m leaning. None of them matter. At least, not now. My only concerns will remain My Body, My Mind, and My Little Love.

Everything will be mine to experience and savor. Because will replace Despite as my rationale for what I do every day. I will write stories. I will record videos. And I will leave a trail of breadcrumbs for you to follow. Join me as I undertake adventures, both big and small, because I am no longer concerned about the constraints multiple sclerosis places on me. Bear with me when I share some of the horrific aspects of my life Because of the devastating effects that multiple sclerosis blankets me with. Without modesty or humility, you will see just how far multiple sclerosis has pushed me. I hope you understand why I snapped and fought back.

Multiple sclerosis means more to me than I expected. This phase of my life is the Aftermath of Multiple Sclerosis.

My fight is not over. I will continue to fundraise for the National MS Society with the goal of ending this nightmare before it settles on the next generation. Bike MS will continue to be the cause we support. Maybe I will get back out there someday. If not, I will make it a constant reminder of why I fight: because of what multiple sclerosis took from me.

Please support our fight: https://MSSociety.donordrive.com/participant/Rogue

Please follow my journey:

https://NeverStopNeverQuit.com

https://www.facebook.com/NeverStopNeverQuit

https://twitter.com/NStopNQuit

 

https://linktr.ee/KevJByrne

Everything Is Completely F^#$’d Up

 

It’s not getting better, and it never will.

No other picture could capture my mood like this one. Welcome back to the emergency room, Kevin!

Countless times in the past, I came to that realization before dismissing my naysayer attitude. The devil on my shoulder, a persistent Beelzebub of Pessimism, tormented my thoughts every time I shared stories of small victories with my readers. After stumbling through the proverbial muck and mud created by the downpour of multiple sclerosis, navigating the countless obstacles encountered on my incessant climb up this avalanche-plagued gravestone, I rejoiced in my discoveries that led to conquering “it.”

Fools and dreamers are crushed under the heaviness of setbacks while still trying to react with an idiotic resiliency that fortifies their commitment and sharpens their efforts. It’s a sickening cycle we face again and again, over and over, until one of three things happens. They quit and move on–leaving one part of their life a failure. They fight countless setbacks with a barrage of recalibrated bursts until they die–that part of their legacy forever a failure. They win.

I am not going to win.

I am not going to quit.

Nature has not gifted me an option, but rather one unavoidable consequence for the life I squandered until October 6, 1999, the day I sat in the commander’s seat of a US Army Humvee, on my way back to Camp Eagle (H-401), and read those damning words: 다발성 경화증 가능성.

Words.

Regardless of the context, irrespective of the translation, no matter whose mouth they originate from, “You Have MS” is a gut punch to which there is no retaliation. My best attempt has been to personalize multiple sclerosis through words. I tried thousands of times. Describing the distortion of my body, I gave it shape and form because if it exists, it can become a target. Chronicling the 25 years of pain and anguish it has inflicted on my body, I shared its incessant damage because, if it causes suffering, others will despise it. Sharing the ongoing research and medical breakthroughs, I painted possibilities of a world free of MS because if we paint progress, the desire to reinforce the effort upticks.

But then, July turned to August. Emails and social media posts began to flood my senses with a simple, irritatingly Pavlovian message: Bike MS Is Coming! My mouth ran dry, in direct contrast to the classical condition response I clung to for the past 20 years.

“Fuck,” I said.

In an empty house, I finally broke down and let ’em have it. I directed my conversation at no one…nothing…everything…something. My focus neither stared at anything nor scanned for something. Like the cliché of a stereotypical nut-job, I roamed my house in search of a mark to spew my venom.

“I can’t do this anymore. My pain and anguish are well documented. Mounting levels are nothing more than another layer of the same shit. I’ve given up on the repetitive rise and crash of my hopes for the next breakthrough I will never see. Even if I’m not tired of saying it, who the hell wants to hear another season of my pissing and moaning? I don’t.”

Just like that, I was done.

After a quarter-century of living with MS, my breaking point was the thought of once again struggling to piece together a collapsed house of cards, then branding my re-cleansed work: Bigger–Better–Stronger–Faster. Not this year. The only version I can present in 2024 is smaller, weaker, and slower. All that remains is a chance to be better. Wholesome images of making life even a smidgen better parallel childlike fantasies of making it all better. But better for whom? Give up, Kevin. Just stop saying better.

At bike MS 2023, I spoke with the riders and supporters gathered Saturday night. Triumphs and celebrations fell to the wayside when the Prince of Darkness whispered from my shoulder and convinced me to admit, “I will never see a world free of MS. I will never see that. If MS is cured tomorrow, the damage that it has done to me is unrecoverable. The memories it has burned into my brain will never go away.”

Translation: I’m fucked.

I turned to my daughter and let everyone in on the dirty little secret they already knew. “Rogue was born into this. She didn’t earn it, nor did she ask for it. But she will never see a world free of MS because of the memories of her dad….” You get the idea. You can watch the video, but here’s the translation: She’s fucked, as well.

Actually, please watch this short, 1:45-minute clip from that speech (https://www.youtube.com/watch?v=aZoHsIKFKWg).

Long after we find a cure for MS, when the carnival atmosphere is no longer necessary because the world has shifted its attention to a new motif, a child will be born. Maybe they will ask Rogue to tell them a story; perhaps she will need to share her memories of “back in the day.” The story will be about me, and I hope the memory will portray my time in a cheerful light. Something will spark the need for discussion about my disabilities.

“What was the matter with him?” they might ask.

“Oh, my daddy struggled with multiple sclerosis for a long, long time.” Furled brows will betray the little one’s confusion before they struggle with a question.

“What’s multiple skirsis?”

Rendered speechless by the child’s curiosity, Rogue will need a moment before her next heartbeat and gasp of air. A blink will be needed to ward off that single tear forming in her eye. Back behind the cobwebs of near-forgotten memories, she will dig up the day I first predicted her peering into that child’s eyes and thinking That’s what a world free of MS looks like. Damn!

I will do anything in my power for my daughter if those efforts contribute to a positive, nurturing world for her. She has already earned her moment, yet will continue to pay installments of sacrifice and sorrow. After dumping words from my brain, I don’t know what direction my stories will take or their final message. “This is why we need to do more” is the theme I aim to project. Beyond that simple tenet, I can’t promise any discernible pattern this year.

I despise everything I will do over the next few months. When you read descriptions of my deteriorating physical condition, please understand my anger. Multiple sclerosis is forcing me to describe every painful slice it has carved from my body, pulling the imagery from me even as it continues the devastation. A constant revisit to my darkest moments is the price I must pay to give Rogue that flash of enlightenment one day, far in the future.

This is why we need to do more.

I don’t want your sympathy.

I do need your support.

Please visit https://NeverStopNeverQuit.com/donate/ and make a contribution today. One hundred percent of the money you give will go to the National MS Society in support of our bike MS 2024 campaign.

This is why I fight.

Just like that, I’m not done anymore.

Fuck.